Thursday, March 29, 2007
Shoes Please!
Lila cracks us up these days... It's nice to get a good laugh in every once in a while! She is typical girl... very into shoes! She used to try on her Daddy's and parade around the house in my shoes (or try to parade around the house, we usually took a few tumbles). Lately she has been taking her own shoes off and on and off and on! My mom has bought her several new pairs since she has been in town and Lila could not be more proud of them!
Scary Day
These are a few pictures we took of Emily last night.
Yesterday I had a chance to speak with Emily's neonatologist and her occupational therapist. In the morning the neonatologist outlined the plan to get Emily back on track with her feedings. He said that we are past the seven to ten day mark when weight loss is acceptable but now we really should be turning it around and gaining weight slowly but surely. He ordered the HMF (Human Milk Fortifier) calorie pack back to her feedings putting her again at 22 calories per feed. He said they will monitor her closely to make sure she tolerates the change and go from there. Should she not do well with this again there is another medication they can give her to try and increase her weight. She has lost another 500 grams so at this point we need to add something to the milk in order for her to grow and come home! In the afternoon I met with Emily's occupational therapist. She was really nice and seemed to have a genuine concern for both Emily and myself. She explained Emily's developmental plan and how they would periodically be checking to make sure her muscles are growing and her sutures or plates in her head are shifting and separating as they should be. She told me Emily is very feisty for a baby of her gestational age and I am encouraged each time I hear that. It lets me know she is strong and fighting hard to come home to her family that loves her and misses her desperately.
Today was a little harrowing for me. I went up to the hospital at seven thirty this morning for Emily's first feeding with the day shift. Emily didn't do well with her feeding, throwing up five different times a yucky mixture of partially digested milk and mucus (sorry to be so detailed). Once it was so bad, she started choking and turning blue. I have always been so gentle and fragile with her ever mindful of her wires and tubes but when I saw her in distress I jumped out of my chair faster than I have moved in months and started screaming for a nurse while I flipped her over and pounded on her back. We got her to recover and they suctioned out the rest of the yuck from her nose and mouth. All was well until she did it all over again five minutes later. After her feeding I discovered the nurse had not read the orders to have Emily's pump set to 45 minutes which slows down the amount of time it takes for her milk to fill her tummy. (When they moved her gavage tube (feeding tube) from her mouth to her nose and increased her volume of milk they put her gavage on a pump instead of letting gravity push the milk through the tube). The pump had been set at 30 minutes but was changed several days ago when we first tried the HMF and failed. Emily's nurse today had the pump set back to 30 minutes, SO..... I don't know if Emily is still not tolerating the changes with her feedings or if she was sick from the milk being pushed into her little tummy much too quickly. It was so upsetting to me I had to leave but was so afraid to leave her, afraid of her throwing up and choking again without a nurse getting to her fast enough. The nurse practitioner on duty today listened to my fears and promised me she would watch her. I kissed my sweet Emily and laid her back in her isolet on her side just in case she did have another episode. I came straight home and sent Mom right back up there to sit with her through her next feeding. It's SO hard to not be in control. It's SO hard to watch Emily in these terrifying moments knowing I am not able to be by her side every minute of every day to protect her and watch over her. I know God is there and I trust that he will get nurses to her side in an emergency, it's just SO hard not to be there myself. It's SO hard to leave her in the care of others and trust that they will do everything right. Yesterday a baby boy was admitted to the NICU and this morning another one. They are both full term, huge babies ( 8 and 9 lbs.) with respiratory problems. Today around noon the NICU is expecting twins, I'm not sure their gestational age but know they are early. I'm afraid now that Emily is not so critical and these other babies are, that she will be overlooked and have another episode like today. Satan got to me and I have been playing the what if game all morning. What if I hadn't been there? For some reason her alarm did not go off when she started choking and gasping for air. Would the nurse have noticed? Would it have been in time? What if it happens again? How can I bear this?
Today continue to pray that I will find peace. Continue to pray for Emily's feedings and bradys. Pray for Wayne, Lila and Mom as they deal with me and my fears, uncertainty, aching heart and roller coaster of emotions. I sometimes forget that they might have a harder time than I because they are worried about Emily too and then have to deal with me on top of that! Pray for Emily's doctors and nurses. And pray for good news for me tomorrow as I have the ultrasound on my thyroid. I truly cannot handle one more thing on my plate right now... but then again God has been faithful. He hasn't let me down yet. He gets me up and out of bed every morning despite my exhaustion. If something is wrong, I know he will see us through yet again! I know I have said this before but I am so overwhelmed by the love he has poured out on me and my sweet baby... make that sweet babies... Lila seems to be handling all this so well... at least this week! I am just so proud of both my girls! Thank you for your prayers. God is hearing them and answering them faster than I imagined!
"Wait and See"
"We'll just have to wait and see." I have heard that expression too many times in the past two days. I hate having to 'wait and see'. Okay, so the past few days have been rough. Emily has had her first little setback and although it is a minor setback any setback at this point means she has to stay in the hospital longer. I can't bear the thought! We had been doing so well with breathing and feedings I was almost ready to pinch myself just to see if everything was real. Then Sunday night we had a slight turn for the worse with our feedings. Emily was up to an ounce per feeding with a calorie supplement adding an additional two calories to each feeding. We didn't do so well with the changes having loose stools, a distended abdomen and a residual of 9 ccs after her midnight snack (a residual is how much milk they can pull back out of the gavage tube right before her next feeding... basically how much milk she was unable to digest). By the next morning her tummy was hard and she had "abdominal loops" (actual loops in her intestines, it looked and felt like she had swallowed marbles). The neonatologist was called in and all feedings stopped until he could get over to the hospital to check her out. An x-ray was ordered to check the loops and the supplemental calories were stopped. Basically I was told that Emily was not ready for this next step and we needed to 'wait, let her catch up and see what happens from here'... ugh! Today Emily's girth still shows a distended abdomen but thankfully God answered my prayers yet again and the abdominal loops are gone. The neonatologist ordered an increase in milk volume so we can still get a few extra calories without having to add the calorie supplement. His plan is to "wait and see what happens." Emily has not done well today with this change either, she spits up quite a bit of her milk during each feeding and has a residual of 2-3 ccs after each feed. Also, she seems restless and has been making these sad little faces like she is hurting. This afternoon when I was holding her she kept making a pitiful little groaning sound. Her temperature had gone up when Wayne and I were with her tonight and I know she isn't feeling well. I am worried about what tomorrow has in store for us. We have been told that the next two weeks would be our slow time.... Emily just needs to eat and grow before we can move on to the hard stuff. Now I am discouraged that her feedings aren't going as planned which means we are not eating and growing, which means the hard stuff is now even further away. If we can't make it over this mole hill how will we climb the mountain? I know the answer to my own question... with faith as small as a mustard seed... yet still feel discouraged and overwhelmed. Emily hasn't gained an ounce in the past four days and still has a lot of catching up to do just to make it back up to her birth weight! Please pray specifically for her feedings and for the doctors as we are in this 'wait and see' holding pattern.
Please don't take my discouragment as anything more than a little discouragement. I spoke with a friend the other day that had twins born at 24 weeks weighing in at 1 lb. and 1 lb. 5 oz. They were in the hospital until they were 61/2 months and 10 months. I cried with my friend as she relived her nightmare with me, telling me of all the times they got calls in the middle of the night to get up to the hospital because one of the babies was about to die. She told me of countless conversations with doctors about how her babies would be mentally retarded and not be able to function in the world. Our conversation made me count my blessings and then count them all over again! I will admit this is the hardest thing I have ever gone through... if only I could have those kidney stones again... but the Lord is going to see me through. And I praise him that Emily was born at thirty weeks and not any earlier. It would have been a whole new wait and see game then. I was rejoicing and praising God for each new day and gained strength for Emily but now that we have hit a plateau, I feel Satan creeping in. My guilt over Emily's early arrival is overwhelming me. I can't hush the voices in mind... the what if I hadn't gone to Target that one time to buy Lila something, what if I hadn't walked down to the neighborhood playground the weekend before she was born, etc. etc. The situation is finally really starting to sink in and I am finding myself exhausted, physically and emotionally exhausted, as never before. I went to see my doctor this morning for a blood pressure check (yes, still having problems with high blood pressure). I couldn't stop crying in her office and it wasn't long before she was crying right along with me. Needless to say I left there with a diagnosis of post-partum depression and a prescription for antidepressents. Hopefully I will be back to feeling like myself soon. The past week and a half have been indescribable, full of guilt, fear, chaos, heart wrenching pain and sadness (and that's just the emotional distress). I told Mom and Wayne that I don't like the person I am starting to become. I am tired, I cry at the drop of a hat inconsolably, sometimes for hours, and yesterday I was so grouchy, and hate to admit this weakness, but I lashed out at people I love with words I'm sure stung and hurt the receipents. I know that God is near and he will see me through this trying time but I am still so desperate for his peace. I need to slow down, take time to breathe, but my heart aches for Emily and I long for the days when we are back on track amazing everyone with our steady progress. The NICU nurses are amazing, gentle and kind, but they are not her mother. I need to be there with her, sitting by her isolet, holding her tiny hand, spending time with her skin to skin and loving on her. I need so badly for her to come home and she needs so badly to stay where she can grow and get stronger. Please pray for me to find God's peace and comfort. Pray that my blood pressure will stabilize and pray for my thyroid sono that is scheduled for later this week... I'm not sure I can handle too much more on my plate right now! Kidney stones and gallbladder with Lila, thyroid issues and depression with Emily... having a baby is so much fun!
Please don't take my discouragment as anything more than a little discouragement. I spoke with a friend the other day that had twins born at 24 weeks weighing in at 1 lb. and 1 lb. 5 oz. They were in the hospital until they were 61/2 months and 10 months. I cried with my friend as she relived her nightmare with me, telling me of all the times they got calls in the middle of the night to get up to the hospital because one of the babies was about to die. She told me of countless conversations with doctors about how her babies would be mentally retarded and not be able to function in the world. Our conversation made me count my blessings and then count them all over again! I will admit this is the hardest thing I have ever gone through... if only I could have those kidney stones again... but the Lord is going to see me through. And I praise him that Emily was born at thirty weeks and not any earlier. It would have been a whole new wait and see game then. I was rejoicing and praising God for each new day and gained strength for Emily but now that we have hit a plateau, I feel Satan creeping in. My guilt over Emily's early arrival is overwhelming me. I can't hush the voices in mind... the what if I hadn't gone to Target that one time to buy Lila something, what if I hadn't walked down to the neighborhood playground the weekend before she was born, etc. etc. The situation is finally really starting to sink in and I am finding myself exhausted, physically and emotionally exhausted, as never before. I went to see my doctor this morning for a blood pressure check (yes, still having problems with high blood pressure). I couldn't stop crying in her office and it wasn't long before she was crying right along with me. Needless to say I left there with a diagnosis of post-partum depression and a prescription for antidepressents. Hopefully I will be back to feeling like myself soon. The past week and a half have been indescribable, full of guilt, fear, chaos, heart wrenching pain and sadness (and that's just the emotional distress). I told Mom and Wayne that I don't like the person I am starting to become. I am tired, I cry at the drop of a hat inconsolably, sometimes for hours, and yesterday I was so grouchy, and hate to admit this weakness, but I lashed out at people I love with words I'm sure stung and hurt the receipents. I know that God is near and he will see me through this trying time but I am still so desperate for his peace. I need to slow down, take time to breathe, but my heart aches for Emily and I long for the days when we are back on track amazing everyone with our steady progress. The NICU nurses are amazing, gentle and kind, but they are not her mother. I need to be there with her, sitting by her isolet, holding her tiny hand, spending time with her skin to skin and loving on her. I need so badly for her to come home and she needs so badly to stay where she can grow and get stronger. Please pray for me to find God's peace and comfort. Pray that my blood pressure will stabilize and pray for my thyroid sono that is scheduled for later this week... I'm not sure I can handle too much more on my plate right now! Kidney stones and gallbladder with Lila, thyroid issues and depression with Emily... having a baby is so much fun!
Un update from Mimi
This afternoon, (Sunday) Samantha and I left Lila with Wayne, and went to the hospital to visit Emily. This morning they had taken out the oxygen tubes, and Emily is doing great breathing on her own! This is the first praise of the day!
After feeding her, the nurse told us if we had brought clothes to go ahead and play dress up - we were on our own! She actually walked away and left us all by ourselves!!
Thus the second praise of the day!
Samantha changed Emily's diaper, then we dressed her in an outfit Aunt Summer and Uncle B got for her. She looked so adorable!! We CAREFULLY took her out of the omnibed - I promise this is the name of her pricey little environment - and held her and took lots of pictures. This isn't so hard, except for making sure all the wires are where they should be and not tangled. Emily slept the whole time we were playing with her! The monitors went off a couple of times, but though it excited me a little, Emily's nurse said everything was fine! She also told us we are beginning a long spell where hopefully there will be no daily news flash and Emily will just be hanging out in the NICU, eating and growing.
Things we learned today:
Emily can breathe on her own!
She doesn't like her diaper changed, but doesn't mind being dirty, either!
We learned that Emily's daily caloric intake is 22!
Emily looks good in white.
Most of the preemie clothes we bought are huge, but Emily does have one outfit she can wear right now.
Emily now weighs 3lbs, 8oz.
The next step in a day or two will be to see how Emily does in a regular NICU unit that doesn't automatically control the temperature for her.
Emily's progress continues to amaze us. It seems whenever they tell us she will progress to a new step in a few days or in a week, Emily reaches her goal in one day or two. As Samantha has expressed, we are in awe of His faithfullness to hear and give Emily not only what she needs, but in abundance. We are so very thankful.
Pray for Emily to continue to grow and gain weight and stay healthy and safe.
Please continue to pray for all of us.
This scripture has a profound new meaning to me:
"Yet those who wait for the LORD will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary."
Pray specifically for all of us to gain new stregnth each night so that we can run each day and not become weary.
Love, Judy
Thursday, March 22, 2007
A Minor Setback for Mom...
As my dear sweet friend Krissi so adequately said, 'As mothers we think we can run forever; the truth is... our heart will, but our body does run out of gas.' My body ran out of gas faster than I was willing to admit and I was readmitted to the hospital yesterday afternoon due to high blood pressure. I have been trying so hard ever since last Thursday when this nightmare began to be the best mommy I could to both of my girls. I was extremely frustrated by this setback but tolerated the bed rest and labwork (remember I am a VERY difficult stick and once again had to have my finger sliced in order to get blood for labs). Hospitalization meant I could once again be a short walk to my little sweet pea. I was discharged this evening on the condition that I come home, take an ambien and rest but I find myself right back on the computer because I know that Emily's steady progress is due to the many prayers going up on her behalf from all over the world. Please know that Wayne and I will never be able to thank you all enough for all the prayers, love and support we have felt this past week. I am overcome with emotion and can't hold back my tears as I rejoice in God's bountiful blessings and protection. It is not by mere coincidence that he has blessed us with each and every one of you, our faithful friends and prayer warriors.
Emily has had an excellent day. I visited with her for several hours this morning and got to hold her for about an hour and a half. She had one brady but her heart rate only dropped to 71 and she recovered very quickly. Of course I was terrified but grateful to see that she was stable again after only a few seconds. She had a total of six episodes today but only three qualified as actual bradys. Three of those times she was able to stabilize on her own in less than five seconds. I was able to kangaroo care with her again this afternoon for another hour and a half and took full advantage of that time to kiss her little head! Wayne kangarooed with her yesterday so he let me have a turn today but was quick to let me know tomorrow was his turn again! I am so proud of her and give God all the glory for her continued strength. She is now up to half an ounce each feeding and tolerating her milk well. She weighs in at 3 lbs. 5 oz. today and is holding steady. Yesterday her bilirubin number was down so they stopped the light therapy. This morning it had gone up half a point but she will not have to go back 'to the beach' just yet... it's another one of those wait, watch and see things. Hopefully tomorrow it will be back down. Again, this is really the least of concerns on a long list of obstacles Emily needs to overcome. The fancy bed that she is in does most of the work for her so that her little body can focus on gaining weight. Her body temperature, oxygen level and breathing are all being controlled for her at this point so that she can use all of her energy on growing. Even with all the progress she is still a very sick little girl and I have to keep reminding myself of this fact. She looks so amazing, perfectly formed by our awesome maker, with ten of the smallest fingers and toes you've ever seen and the tiniest little button nose. She even takes after her Mimi right now with dark brown hair. It's the inside of her that still hasn't formed completely. She still lacks the muscles between her little ribs that help with her breathing and she missed out on a few weeks of rapid brain growth that now has to take place outside of the womb. Although she is doing amazingly well right now with all these early milestones, I am well aware that the journey may be long and setbacks may be lurking at every corner. Please continue to pray for our sweet baby girl. Pray that she will continue to grow and have a decrease ithe bradys. I think Wayne could use some prayers right now as well. He has been so strong for all of us and I can tell he is losing steam. Help us praise God for the gifts and blessings we have already received and pray for continued strength. I pray over her constantly and pray with such faith in our savior. I know that we need to ask as though He has already granted our request. I know that He will heal and restore little Emily. I know that this is just a page if not a mere paragraph of her life's story. I know that she will be home having tea parties with her big sister who loves her so much. Raising her to know God's love will be my life's work. I will tell her someday how much He loved her and how much He sustained her in her first few days, weeks, and months of life. She will someday be a diligent servant of his, just as each of you, and will do great things for her King. Thank you again for your prayers, calls, visits and encouraging emails. I am printing them off and making a book that she can read someday to fully understand the love that so many have for her and her family. Again Wayne and I feel so very blessed to be her parents. She is the icing on an already perfect cake!
Emily has had an excellent day. I visited with her for several hours this morning and got to hold her for about an hour and a half. She had one brady but her heart rate only dropped to 71 and she recovered very quickly. Of course I was terrified but grateful to see that she was stable again after only a few seconds. She had a total of six episodes today but only three qualified as actual bradys. Three of those times she was able to stabilize on her own in less than five seconds. I was able to kangaroo care with her again this afternoon for another hour and a half and took full advantage of that time to kiss her little head! Wayne kangarooed with her yesterday so he let me have a turn today but was quick to let me know tomorrow was his turn again! I am so proud of her and give God all the glory for her continued strength. She is now up to half an ounce each feeding and tolerating her milk well. She weighs in at 3 lbs. 5 oz. today and is holding steady. Yesterday her bilirubin number was down so they stopped the light therapy. This morning it had gone up half a point but she will not have to go back 'to the beach' just yet... it's another one of those wait, watch and see things. Hopefully tomorrow it will be back down. Again, this is really the least of concerns on a long list of obstacles Emily needs to overcome. The fancy bed that she is in does most of the work for her so that her little body can focus on gaining weight. Her body temperature, oxygen level and breathing are all being controlled for her at this point so that she can use all of her energy on growing. Even with all the progress she is still a very sick little girl and I have to keep reminding myself of this fact. She looks so amazing, perfectly formed by our awesome maker, with ten of the smallest fingers and toes you've ever seen and the tiniest little button nose. She even takes after her Mimi right now with dark brown hair. It's the inside of her that still hasn't formed completely. She still lacks the muscles between her little ribs that help with her breathing and she missed out on a few weeks of rapid brain growth that now has to take place outside of the womb. Although she is doing amazingly well right now with all these early milestones, I am well aware that the journey may be long and setbacks may be lurking at every corner. Please continue to pray for our sweet baby girl. Pray that she will continue to grow and have a decrease ithe bradys. I think Wayne could use some prayers right now as well. He has been so strong for all of us and I can tell he is losing steam. Help us praise God for the gifts and blessings we have already received and pray for continued strength. I pray over her constantly and pray with such faith in our savior. I know that we need to ask as though He has already granted our request. I know that He will heal and restore little Emily. I know that this is just a page if not a mere paragraph of her life's story. I know that she will be home having tea parties with her big sister who loves her so much. Raising her to know God's love will be my life's work. I will tell her someday how much He loved her and how much He sustained her in her first few days, weeks, and months of life. She will someday be a diligent servant of his, just as each of you, and will do great things for her King. Thank you again for your prayers, calls, visits and encouraging emails. I am printing them off and making a book that she can read someday to fully understand the love that so many have for her and her family. Again Wayne and I feel so very blessed to be her parents. She is the icing on an already perfect cake!
Praise God!
God is so good! He just continues to bless us without ceasing! His love and protection are evident with each day that passes. My little Emily is now six days old and stronger than ever. We arrived at the hospital yesterday morning to find a surprise waiting for us in the NICU. Emily is now off her c-pap vent! My cup runneth over as I saw her beautiful little face peering up at me. I had only seen her for maybe five seconds in the operating room before they rushed her back to the NICU and had been longing to see that little face again ever since! It was hard to really see her little features with the c-pap and hat that held it in place. Now I could stare at her all day long and pretty much did just that! She has graduated to nasal canulas and hopefully won't be on them for very long. Her day nurse had quite a day readjusting them because Emily has her mind made up that she doesn't need them and has constantly pulled them out herself! While Wayne and I were visiting this afternoon we watched her pull them out of her nose and use them as a pacifier. I told you earlier she was a feisty one!
We have been blessed with wonderful doctors and nurses on the NICU staff so far but Emily's nurse yesterday has really been my favorite. She knows my need and longing to be near my baby. She seems to understand my desire to want to comfort and nurture my child while still feeling fear and hesitation about her tiny size. She reassured me that Emily does need me and knows when I am with her. Emily seems very alert when Wayne and I are with her and often opens her eyes and turns towards the sound of our voices. I had been told that I would not be able to hold her in kangaroo care until the central line in her belly button was removed, but today her nurse felt it was important for us both to spend some special time together and I got to hold her skin to skin. I sat with Emily like this for an hour and we both fell asleep... I will admit to being very sleep deprived lately! My emotions seem to keep me going round the clock and sleep has not come easy, but today holding little Emily felt like the most natural, peaceful thing and it wasn't long before I was dozing off with her in my arms. It must have sent Emily back to more familiar times as well hearing my heartbeat, breathing, etc. because her monitors had never looked better the whole time I held her! Wayne was a little weary of trying it yesterday but after a little nagging and a few nudges has promised to give it a try today. Emily's night nurse told us that most Dads feel this way at first but once they try it they end up doing it everyday! I can't tell you how wonderful it was to hold her, smell her and kiss her little face!
Now, we've been told over and over again the past several days that you can never trust a preemie and so along with all the good comes a little bad. Emily's bilirubin numbers went up so we are spending some time in photo therapy. This is really no big deal, in fact a lot of full term babies have jaundice and require some time under the lights. Emily doesn't like it and seems to be a bit restless but it's only for a few days. She basically just lays under a really bright light so the pigment in her skin can be broken down and eliminated through her wet and dirty diapers. It's like taking a mini vacation to the beach... she even has these goggles she has to wear to protect her eyes. We were joking about how fashionable they were and Wayne promised to buy her some better sunglasses someday and the nurse told us they cost about the same as two pairs of Oakley sunglasses... it seems we've got top of the line baby goggles now!
Yesterday was such a good day. It started out with a great surprise and Wayne and I are overjoyed and so proud of the progress Emily has made. She really is holding steady and right now just knowing that is what we need to sustain us through these difficult days. Emily has continued to have a few episodes with apnea and there has been some talk about measures that may need to be put in place in order to help resolve these bradys. We may be starting a caffeine IV or going back to the c-pap. I called last night to check on Emily before going to bed and started missing her all over again so Mom drove me up there to be with her for her eleven o'clock feeding. I held her and fed her and then convinced Mom to hold her for the first time (she's been nervous about her tiny size and the entourage of wires and monitors). Mom held her for a long time while we talked with the nurse and then Emily had a brady. A bad one. I watched the monitor as her heart rate went from 156 to 50 in less than five seconds. The nurse really had to work, thumping Emily's feet, in order to get her to take a breath. It was really scary for Mom and I... we had heard that earlier that day Emily had to be picked up during a brady and turned over in order to remember to breathe... seeing it first hand really rattled us. I know this is something that will only get better as Emily grows. I constantly am reminded that she shouldn't be here now... she should have had ten more weeks to grow and develop safely inside me. She's premature and her little body is not capable of working like a full term baby. She needs patience and time to catch up. Those are the two hardest things for me to give her. I want her healthy right now and don't like the thought of having to wait ten weeks to get there. Thus the peaks and valleys... a good day off c-pap, a bad day of bradys... praise and elation over the good and frustration with the waiting. I guess tonight we all need prayers. For Emily, continued steady progress and a decline in bradys. For me, patience and strength to get through the highs and lows which I am learning can change with a five second brady. As always though I praise God that Emily could be born at thirty weeks and be as strong and healthy as she is... the fact that she is even here is a miracle in and of itself. There is no limit to what God can do and he will see us through this... I just need to lean on him and trust that his perfect timing is all I want.
I forgot to mention that Emily had her first bath today, and is now wearing a cute little bow! You know a girl is never too young to accessorize!!
Emily Update
The three hardest things I have ever done in my life.... 1) bringing Lila into this world, 2) bringing Emily into this world, 3) leaving my sweet Emily in the NICU for this second phase of our long, emotional journey. I'm home. I was discharged yesterday and finally willed myself to muster up enough courage to leave her in the caring, capable hands of the NICU staff around six o'clock last night. It was so very hard and cried unconsolably for almost an hour but felt better once I got home to Lila. She has been showered with love and spoiled by her Mimi, Papa,, Aunt Summer, Uncle B and cousins for the past several days but you could see all over her face how excited and relieved she was to have Wayne and I back home with her. I think it will be good for all of us to have some normalcy and routine back to our days and nights. I'm sorry we haven't been doing a better job at keeping everyone up to date on Emily's progress but everything so far has been so overwhelming. I just have been concentrating on putting one foot in front of the other and taking it one hour at a time remembering to breath and that Emily is in God's loving hands. He will sustain her and has sent an army of angels to keep watch over her. I will try to send out emails as often as I can so that all of you will be able to pray for our specific prayer requests. We know that God is in control and we feel his love and mercy surrounding us. He has always been so faithful and good to us and this is yet another shining example of the love he has for our family.
Emily is stunningly beautiful and reminds Wayne and I so much of Lila. We haven't had a really good look at her face because of the c-pap and hat she must wear for her oxygen but she takes after her sister in so many ways. She is spunky and is already showing signs of a willfull personality! She has her Daddy's fingers and toes... her little feet are my favorite... smaller than the size of my thumb with ten teeny, tiny little toes. I've heard that she has some hair and Mom and I got to have a quick look at her the other night without her c-pap hat and I really think she has more than Lila did when she was born... you all know how exciting that is for me since it has taken Lila far too long to grow what little bit she has now. All her nurses joke about her fiesty attitude and personality. For as small as she is, she certainly has no problem letting you know when she's mad or uncomfortable! Her little cry makes my heart rejoice... for that cry reminds me she is here and doing well.
We are allowed to be with her twenty four hours a day but are encouraged to interact with her only during "touch time", every three hours when they reposition her, take her vitals, change her diaper, and feed her. She is so very small and at first it was difficult to touch her in fear that she would hurt at the slightest touch but we have gotten really good at taking her temperature and changing her diapers. Wayne is better at the diapers than I but we're both slowly and surely getting accoustomed to her size and needs. Her x-rays each morning show her holding steady. They are still hazy but right now we are in a watch and wait state. There isn't anything too alarming showing up that would require action at this time. She has lost weight which was to be expected, and now comes in just under 3 lbs. 5 oz. Yesterday they increased her volume of milk from 4 ccs to 6 ccs and only once after a feeding had they found she did not digest all her intake. They have also started a lipids drip which is basically just nutrients and calories to fatten her up a bit. Because of the c-pap in her nose she has a feeding tube that goes down her throat and straight into her stomach. She gets her milk through a syringe in which gravity forces the milk through the tube. Occasionally they have to help push the milk through the tube just to speed up the process. Once we get off the c-pap the feeding tube will be put in her nose allowing her more comfort and easier use of her paci. She LOVES her paci and we are encouraged by this because it should help when we get to bottle feeds hopefully in three weeks. Our purple paci is the favorite at the moment... grape flavored... which Mimi gets a kick out of! Yesterday morning she went down to a c-pap setting of four and has done a marvelous job at holding steady with that. She still has moments of rapid breathing but the change in c-pap settings is an answered prayer. Her oxygen levels are still inconsistent but most of the time she is only requiring 21% which is equivalent to the level of room air. She had a little difficulty yesterday maintaining her body temperature but her bed is still providing her body with the temperature she needs so she doesn't have to work so hard to stay warm enough on her own. We were told late Sunday night not to be surprised if she had to have light therapy for a few days due to her belly ribbon number being high but after a sleepless night for me I wandered down to the NICU to sit with her around four Monday morning and was told her numbers had gone down so no light therapy as of yet. I praise God for these little blessings for I know there are peaks and valleys in our future. We will have highs and lows, good news and bad but we will make it. Emily has already proven to be a fighter and God's faithfulness has never been greater.
There are no new blood gases ordered much to my delight! She is a hard stick, like her mama, and very bruised up from all the work to establish an IV and from the blood draws each morning. Her IV failed after the second day. The vein it was in collapsed and infultrated causing her arm to swell and burned the sensitive skin on her hand. They didn't have success finding a new vein so they were forced to put in a central line. I am very happy they were able to go in through her belly button as opposed to her scalp as this will keep Emily from further discomfort from needles. The central line makes getting her meds easy and painless. Now future blood gases will come from a prick in her foot, still not fun but will give her little hands and arms a much needed break. The central line will keep us from holding her skin to skin (kangaroo care) but we have been able to hold her twice now all bundled up in blankets making sure she stays warm. That has truly been the best medicine for me! The first time we got to hold her for an hour as long as she handled it well... she did great and I held my baby for fifty minutes before realizing I needed to let her Daddy have a turn! Wayne was and has been so patient knowing that I needed so badly to hold my little angel and nuture her as any mother needs. Wayne has been our rock... trying so hard to meet the needs of all his girls. I couldn't have made it through the past four days without him! And I have let him hold Emily for a few minutes each time we are allowed! :) Yesterday before we left her they let us hold her for almost two hours. She slept in my arms most of the time but had a few alert periods when we opened her eyes at the sound of our voices and looked at us very intently. She was so calm and peaceful. The only time she fussed was when we had to leave and they took her away from us.
The only menacing thing I have to report today is the set backs with bradys. A brady is when Emily has apnea and forgets to breathe. Her heart rate gets too low and she forgets to breathe for five seconds or longer. These are very common with preemies and to be expected. She had been having them about once a day but had four yesterday alone and another one during the night. When she has a brady her alarms go off and the nurses rush to her bedside to stimulate her back to breathing again. Sometimes it's just a tap on her enclosed bed that gets her remembering to breath, other times they have to nudge her with a little touch. I know there is little explanation needed for you to know how very frightening this is for us. I am boldly asking God, knowing he will hear my prayer, to correct what needs fixing so we can stop having these bradys. I know they are expected and she will probably have more but the mere fact that we are having them more often is disheartening and hard to take. Please pray for an increase in her heart rate so the bradys will stop. Pray also for her breathing and oxygen levels to stay the same. Hopefully soon we will get rid of the c-pap and be on nose canulas. I can't wait for that day so I can see her little face!
We have so appreciated each prayer, call, visit,, hug, flower arrangement and piece of chocolate! Thank you all for loving us and our little sweet pea! She is doing as well as can be expected. I love her so much and am so blessed and grateful to be her mommy. Please continue to keep us in your prayers. They are working!
All our love,
Wayne, Samantha, Lila, and Emily
Emily is stunningly beautiful and reminds Wayne and I so much of Lila. We haven't had a really good look at her face because of the c-pap and hat she must wear for her oxygen but she takes after her sister in so many ways. She is spunky and is already showing signs of a willfull personality! She has her Daddy's fingers and toes... her little feet are my favorite... smaller than the size of my thumb with ten teeny, tiny little toes. I've heard that she has some hair and Mom and I got to have a quick look at her the other night without her c-pap hat and I really think she has more than Lila did when she was born... you all know how exciting that is for me since it has taken Lila far too long to grow what little bit she has now. All her nurses joke about her fiesty attitude and personality. For as small as she is, she certainly has no problem letting you know when she's mad or uncomfortable! Her little cry makes my heart rejoice... for that cry reminds me she is here and doing well.
We are allowed to be with her twenty four hours a day but are encouraged to interact with her only during "touch time", every three hours when they reposition her, take her vitals, change her diaper, and feed her. She is so very small and at first it was difficult to touch her in fear that she would hurt at the slightest touch but we have gotten really good at taking her temperature and changing her diapers. Wayne is better at the diapers than I but we're both slowly and surely getting accoustomed to her size and needs. Her x-rays each morning show her holding steady. They are still hazy but right now we are in a watch and wait state. There isn't anything too alarming showing up that would require action at this time. She has lost weight which was to be expected, and now comes in just under 3 lbs. 5 oz. Yesterday they increased her volume of milk from 4 ccs to 6 ccs and only once after a feeding had they found she did not digest all her intake. They have also started a lipids drip which is basically just nutrients and calories to fatten her up a bit. Because of the c-pap in her nose she has a feeding tube that goes down her throat and straight into her stomach. She gets her milk through a syringe in which gravity forces the milk through the tube. Occasionally they have to help push the milk through the tube just to speed up the process. Once we get off the c-pap the feeding tube will be put in her nose allowing her more comfort and easier use of her paci. She LOVES her paci and we are encouraged by this because it should help when we get to bottle feeds hopefully in three weeks. Our purple paci is the favorite at the moment... grape flavored... which Mimi gets a kick out of! Yesterday morning she went down to a c-pap setting of four and has done a marvelous job at holding steady with that. She still has moments of rapid breathing but the change in c-pap settings is an answered prayer. Her oxygen levels are still inconsistent but most of the time she is only requiring 21% which is equivalent to the level of room air. She had a little difficulty yesterday maintaining her body temperature but her bed is still providing her body with the temperature she needs so she doesn't have to work so hard to stay warm enough on her own. We were told late Sunday night not to be surprised if she had to have light therapy for a few days due to her belly ribbon number being high but after a sleepless night for me I wandered down to the NICU to sit with her around four Monday morning and was told her numbers had gone down so no light therapy as of yet. I praise God for these little blessings for I know there are peaks and valleys in our future. We will have highs and lows, good news and bad but we will make it. Emily has already proven to be a fighter and God's faithfulness has never been greater.
There are no new blood gases ordered much to my delight! She is a hard stick, like her mama, and very bruised up from all the work to establish an IV and from the blood draws each morning. Her IV failed after the second day. The vein it was in collapsed and infultrated causing her arm to swell and burned the sensitive skin on her hand. They didn't have success finding a new vein so they were forced to put in a central line. I am very happy they were able to go in through her belly button as opposed to her scalp as this will keep Emily from further discomfort from needles. The central line makes getting her meds easy and painless. Now future blood gases will come from a prick in her foot, still not fun but will give her little hands and arms a much needed break. The central line will keep us from holding her skin to skin (kangaroo care) but we have been able to hold her twice now all bundled up in blankets making sure she stays warm. That has truly been the best medicine for me! The first time we got to hold her for an hour as long as she handled it well... she did great and I held my baby for fifty minutes before realizing I needed to let her Daddy have a turn! Wayne was and has been so patient knowing that I needed so badly to hold my little angel and nuture her as any mother needs. Wayne has been our rock... trying so hard to meet the needs of all his girls. I couldn't have made it through the past four days without him! And I have let him hold Emily for a few minutes each time we are allowed! :) Yesterday before we left her they let us hold her for almost two hours. She slept in my arms most of the time but had a few alert periods when we opened her eyes at the sound of our voices and looked at us very intently. She was so calm and peaceful. The only time she fussed was when we had to leave and they took her away from us.
The only menacing thing I have to report today is the set backs with bradys. A brady is when Emily has apnea and forgets to breathe. Her heart rate gets too low and she forgets to breathe for five seconds or longer. These are very common with preemies and to be expected. She had been having them about once a day but had four yesterday alone and another one during the night. When she has a brady her alarms go off and the nurses rush to her bedside to stimulate her back to breathing again. Sometimes it's just a tap on her enclosed bed that gets her remembering to breath, other times they have to nudge her with a little touch. I know there is little explanation needed for you to know how very frightening this is for us. I am boldly asking God, knowing he will hear my prayer, to correct what needs fixing so we can stop having these bradys. I know they are expected and she will probably have more but the mere fact that we are having them more often is disheartening and hard to take. Please pray for an increase in her heart rate so the bradys will stop. Pray also for her breathing and oxygen levels to stay the same. Hopefully soon we will get rid of the c-pap and be on nose canulas. I can't wait for that day so I can see her little face!
We have so appreciated each prayer, call, visit,, hug, flower arrangement and piece of chocolate! Thank you all for loving us and our little sweet pea! She is doing as well as can be expected. I love her so much and am so blessed and grateful to be her mommy. Please continue to keep us in your prayers. They are working!
All our love,
Wayne, Samantha, Lila, and Emily
Emily Summer Allen
Emily Summer Allen
born
March 16, 2007
12:42 pm
3 lbs. 11oz.
16 3/4"
God is so good and loving and faithful! Emily is holding her own and doing much better than expected. We have a long hard road ahead of us, looking at a stay of ten weeks in the NICU, but I praise God for our answered prayers and know if we lean on him he will sustain us.
My sister is one of my most favorite people in the world, aside from Wayne, Lila, and Emily of course, so naturally when I found out I was having another baby girl I had to name her after my sister. My sister and I are so close and I so wanted a sister for Lila. Summer is such a great example of the servants we should be for our Lord. She is a woman of amazing faith. I hope Emily will be too! I love the thought of honoring special people in your life by naming your children after them. They become a legacy of wonderful, faithful, loving stewards. Lila Seanne is named after my Grandmother, a woman of amazing grace who shows Gods love to all she encounters, now Emily Summer after my dear sweet sister!
The long story short!
Last Wednesday as I was continuing to monitor my blood pressure at home every four hours I started getting extremely high readings, like 169/105. I should have called my doctor right away but thought it was maybe a fluke and knew I was going to her office the next day to pick up some things for lab work so I rested and waited. The next day in her office my blood pressure was so high they ordered me over to Labor and Delivery where I was given steriods and put on a magnesium drip praying all along my baby girl would be able to stay inside me where she was safe. My prayers were answered, not in the way I had hoped, but in the best way for my baby the next morning when a sonogram showed signs we were in trouble. I was given a second dose of steriods and we waited three hours in hopes she would get what she needed for the best shot at lung maturity. I took a deep breath drawing comfort from the fact that we had three things on our side... hypertension in pregnancy which helps speed lung development, a baby girl (Caucasian girls do well when arriving early), and steriods. We held our breath and welcomed our little one ten weeks early!
Tuesday, March 13, 2007
Getting Ready For Sister!
Okay, so recently we have been getting out all the baby things getting ready for sister's arrival. Lila has decided to reconnect with old interests. The bassinet is now a great place for all her dolls and bears, and they must wear a newborn diaper (perfect size for a few of them), and be covered up with a soft blankie. The swing is back in use... we just couldn't wait for Daddy to put that together! The bouncy chair makes a comfy spot for watching her favorite movies, and the paci is back!! We haven't been interested in our paci for over a year but now its our new favorite thing! Will we be able to share all these oldies but goodies when our new sister, the REAL baby, arrives?? Fun times ahead I'm sure!!
Thursday, March 01, 2007
It's been a while... a long while!
Okay so it's official... I'm not the best blogger out there! I haven't posted since Novemeber? Really? It's been that long? I wish I had a really good excuse for my absence but I don't! I could use the whole pregnant excuse but most of you know I've been on bed rest off and on for a good part of this pregnancy and bed rest does mean lots of time on your hands. Oh well, it doesn't matter.. I am posting now and promise not to let months go by before my next post!
The count down has officially begun for baby sister to arrive! My doctor seems to think she might be here as early as eight weeks from now. Hallelujah! We all know I don't do the pregnant thing well and can't wait for her to be here so we can praise God for another blessing despite the difficult journey! I can't wait to see how Lila reacts to her new sister. She has always loved her babies and is really sweet to them. I love to watch her wrap them up in blankets, feed them their baby bottles, and put them up on her shoulder to pat them as if she is burping them. We usually finish the whole routine with a big kiss... it really is so cute! I just hope we are as sweet with the real thing!
The other day I got out all of Lila's preemie and newborn clothes and am having a hard time remembering her that small. Seventeen months later we are really a toddler now but I still think of her as my little baby. Seeing all those tiny clothes makes me realize she's not really a baby anymore! The pictures I posted are of Lila when she was a few weeks old and now as a toddler! It is amazing how much and how fast they grow! I hope the next twenty years don't go this fast!!
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