66 Days in the NICU

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66 Days in the NICU

66 LONG Days in the NICU

Here are the updates as I wrote them to family and friends from the day that Elizabeth Grace was born to the day she was discharged from the NICU.

Link to picture slideshow at bottom. Click VIEW PICTURES after shutterfly opens.

Subj: Elizabeth Grace is here!
Date: 2/27/99 6:00:15 PM Eastern Standard Time

This is true. My baby was delivered by c-section on Feb. 24, 1999. She weighed in at 1 pound 10 ounces, 13 inches long at 28 weeks gestation.

The high blood pressure tore up the placenta and caused her to need to be delivered.

All is going as well as can be expected. I told my kids that it is like we are still pregnant but the baby is at the hospital instead of inside of me.

I am very tired and will not be responding to e-mails. My DH will make a nice announcement with a picture to be delivered to all.

Thanks for your continued prayers.

God promises a little grace for all of us, the GRACE He has given to me weighs 1 pound 10 ounces.

Subj: update on Elizabeth Grace
Date: 3/2/99 7:28:39 PM Eastern Standard Time

Elizabeth Grace is doing quite well for her maturity level. I get to start Kangarooing, this is where a diapered only baby lays on a bare chest, next week (at least that is the goal). Her color is beautiful. She even has a BUTT today. The nurse says it is probably due to edema and not weight gain but it is cute. I just had to give it a light pat.

She has required blood a couple of times but this was expected. She had a heart murmur that was treated with a series of 3 injections, this also was expected and did seem to work.

I stayed at the hospital for 8 hours today and am extremely tired. I am going to go lay down and will try to continue to keep you informed.
Tamie

Subj: Another update on Elizabeth Grace

Date: 3/3/99 10:29:18 PM Eastern Standard Time

I just got home from the hospital. Baby Grace is gaining weight quite well. It seems quicker than expected. We were told it would be one week of losing weight followed by weight gain.

Today being her one-week birthday, she has gained 2.1 ounces ABOVE birth weight. So she has actually gained more since she had lost weight first.

She is on a ventilator with little to no oxygen added.

She has had 3 very content days. This evening, she was not quite so content. That is OK, we all have a bad day or so....

THE BEST NEWS OF ALL --- Mark and I happen to be in the room at time to weigh her. I GOT TO HOLD AND KISS HER FOR THE FIRST TIME. If I had arrived 30 min earlier the nurse was ready to set me up to Kangaroo.

God is good and I am glad.
Tamie

Subj: Another update
Date: 3/6/99 9:00:02 AM Eastern Standard Time

Baby Grace is doing things expected for her. She has now reached an expected complication. It is caused by an irritation from the oxygen. They will have to give her steroids if this is the case. The Drs. are waiting a little longer to make sure that this is what the problem is because they do not want to give steroids if they do not have to.

Her oxygen level needs have increased due to something, probably what I described above. It could be an infection though it does not seem to be that. They do expect some weight loss with this problem as well. He also said that if it does become a problem she will most likely come home on oxygen but he DOES expect that she WILL come HOME.

I have kangarooed twice. I will be giving her a bath soon. It is quite an interesting situation to feel so blessed to be able to give that first kiss and to feel her on my chest. One learns to not take so much for granted. The rest of the family has missed out on all the kisses and holdings, Mark did get a quick kiss once.

Marquita is feeling left out of baby Grace's life. I think I will try to have the kids alternate trips with me. BUT they are not getting their chores done and so it is hard to allow them to do extra things when they cannot get required daily things done.

I am doing fine when it comes to getting over the c-section. My BP is still a problem. Yesterday, I went to see Grace when I began to see spots. The Dr had me lay still on the exam table for 45 min. Then he let me stay to see the baby. Another day they sent me home w/o even a chance to see her. HE did change my medications both times. I have lots of edema in my legs and feet still. They do not seem to even consider it a problem or a sign of a problem.

(Reading this over might be confusing to you as I alternate between saying HE and THEM when referring to the Drs.... It is because I only see one at a time but it is a team of Drs.)

I am pumping my bre*sts so that I can bre*stfeed when she does come home. It is difficult to get up in the night every 3 hours to pump and clean the equipment for the next time. The reason I chose bre*stfeeding is so that I would not have to wash and prepare bottles. Now that is about the ONLY thing I can do for her. I guess you might read some mixed feelings in that idea.

Mark is doing quite well with all of this. He has taken over the daycare real well. He does get irritable at times but who wouldn't. He did buy me a refrigerator for upstairs since the Dr says that I am not to climb stairs until my BP gets under control and pumping was requiring me to climb them a number of times in the night and mornings. He also is going to set me up a place to pump in private downstairs.

God promises a little grace for all of us, the GRACE He has given to me came weighing 1 pound 10 ounces.
Tamie

Subj: Grace - 1 pound 12 ounces
Grace is now up to 1 pound 12 ounces, ONLY 2 ounces from 2 pounds!!

She is now on the steroid I had told you about and they started a type of breathing treatments on her.

She is looking bigger! She looks longer. I need to ask them to measure her length! The steroid is supposed to SLOW her growth so we will see how that goes.

I have been getting interesting responses to "allowing siblings to see baby sister." I obviously did not make myself clear. They are allowed to see her very often. What I was thinking of was allowing a FULL day up at the hospital w/o doing any chores. I tend to get a ride to the hospital in the mornings and stay until they and Daddy come up to see her in the evenings. I was thinking of allowing them to alternate coming with me for the day.... I would NEVER NOT allow them to see her. They need to bond as well as Mark and I.

The problem I am looking at is that they are not getting enough chores done to allow them a whole day w/o doing them. They and we would be so far behind.

Thanks to all the prayers and support e-mails. I read each and everyone!
Tamie

Subj: Elizabeth Grace update
Date: 3/10/99 10:07:56 PM Eastern Standard Time

Our little bit of Grace has lost weight for the past 2 days. They are adding supplements to the breast milk I am pumping and freezing. She is only up to 5 cc of milk per feeding every three hours so the supplements are not much.

The Decadron is working GREAT for her. She is still on a ventilator but the pressure has been reduced and her oxygen needs have been reduced to room air or nearly room air. They hope to only use the Decadron for about 4-6 wks (if I remember right).

I still have not asked if they have measured her length again.

She gets cuter everyday. I held her a couple of hours today after having missed 3 days of holding her.
Tamie

Subj: She is growing!
Date: 3/12/99 11:16:32 AM Eastern Standard Time

The Drs. are increasing her breast milk feedings, by gavage, by 1 cc every other feeding. Soon her IV will not be needed.

They have decreased her Vent pressure and it is only giving her 16 breaths a min. She is doing the rest on her own. Her oxygen needs are near room air.

When I hold her, it is called KANGAROO care. Skin to skin. One of the reasons it is important to her is that being born so small and early requires MANY pokes and jabs, suctionings. It can cause a baby to get a "skin aversion." They begin to think every time that they are touched it will hurt. With kangaroo care, the skin to skin contact is pleasant and permitted to last as long as the baby tolerates it.

These tiny babies do NOT tolerate being moved from one place to another so once they are satisfied where they are it is important for them to remain still. Also when touching these preemies one must NOT stimulate them but keep hands very still and talk quietly. They are not prepared for so much light and noises.

Elizabeth Grace's oxygen needs drop significantly while being held on my or Daddy's chest. It makes one feel so needed.

She has put on a tiny bit of length, from 13 1/4' to 13 1/2". Also her head circumference has increased, from 9 1/8" to 9 3/8". Her weight has been up and down. She does show an increase from birth from 758 gm, 1 pound 10.7 oz to 817 gm, 1 pound 12.8 oz.

What hair she does have seems to be reddish but it is so minimal that it is difficult to say. Her eyebrows are certainly reddish and are thicker than her hair on her head.
Tamie

Subj: GUESS WHAT!!!! :-)
Date: 3/13/99 12:00:27 AM Eastern Standard Time

Baby Grace is off the ventilator. She is on room air and no assistance in breathing. I was completely shocked to find her lying in her bed with NO vent TUBE.

I got to see her upper lip for the first time. She smiled at her Dad and I heard her coo and cry today.

My excitement is too much to explain. We are so happy.

The nurses have warned us that she may be put back on the ventilator after a few days because of tiredness.

Here is a picture of her. To put things into perspective, the teddy is about 3 1/2 inches in length. I put my wedding band, size 7 on her arm. It looked like a dangly bracelet.
Tamie

Subj: BEST NEWS YET!/Baby Grace
Date: 3/17/99 10:13:37 PM Eastern Standard Time
Baby Grace needs a graduation cap with an honor's tassel!!

She not only has been moved into the Convalescent Care Nursery but she has now graduated to a 2 pound baby!

She is now back on oxygen but it was expected as the meds that reduced her needs for it has been weaned off.

The very excited and happy Mommy,
Tamie

Subj: 2 pounds 1.1 ounces!
Date: 3/20/99 10:26:52 PM Eastern Standard Time

The Convalescent Care Nursery (CCN) is different in many ways than that of the Neonatal Intensive Care Unit (NICU).

I am allowed to handle the baby with minimal "corrections" made to me by the nurses. They interact almost only when I ask for help. If I do not ask they are not there telling me that I handle her too much or that I need to do things differently.

The freedom of caring for Elizabeth Grace is great. I did overdo it one day, which caused her to have 2 very brief episodes of bradycardia. So I learned to back off a little. Another day I dressed her on my lap rather than in her isolette, incubator. This caused her to lose some body heat and therefore I learned that I must dress her IN the isolette or at least work at keeping her covered and watch her temp more closely.

The Drs. almost ignore us. I had to go to the Dr to ask a question, otherwise I feel that another day (4 up to that point) would have gone by w/o an opportunity to ask the question. Today the Dr watched me change her diaper and said something about that., nothing as to how she is doing or eating or whatever.

I have taken 2 opportunities to set her at my breast. She cannot get enough of it in her mouth to do any good but the nurses assure me that it is good for her to feel me and be with me in that manner as I gavage feed her. As a matter-of-fact, they suggests that I pump first so that she does not get overwhelmed, confused or choked by my milk coming to fast.

I have tried to make it for her 2pm feedings each day and then I stay for her 5 and 8 O'clock feedings and other routine needs such as diaper changes, temperature checks, and daily weights.

I did get to give her a bath yesterday. The nurse filled a hospital basin, set up a heat lamp and told me that all her lead wires needed to be removed then left me to do as I was to do. It was wonderful and I plan on asking them to allow me to bathe her more routinely.
God is good and I am glad !!
Tamie

Subj: Elizabeth Grace
Date: 3/23/99 9:39:09 AM Eastern Standard Time

Our little sweet baby continues to grow. She now weighs 2 pounds 2.2 ounces. I will have her head circumference and length to type in this Thursday.

She has had a little difficulty with her breathing pattern. The Drs. increased her caffeine dose, which caused her to urinate more so they also had to add Potassium Chloride to her regimen.

This medication change seems to have helped a lot. The other day I had scheduled to give her a bath but her nurse recommended that we just quietly cuddle and not do the bath. Last night her stats looked much better so I gave her a bath.

She smelled so sweet after a bath. I dressed her in a sleeper I had cut down to fit her tiny little self. It is cute to see her dressed in real clothes that fit and I will be able to show her how tiny she was when she gets older.

I will get a picture of her dressed soon and send it out. Also, the first pictures with the ring on her arm did NOT take. Two weeks later the ring still fit and more pictures have been taken BUT we have not developed them. We have had tons of difficulty with one of the cameras and the others were purchased for Marquita and Nathaneal to use over her entire hospitalization so we are not rushing those to development.
Tamie

Subj: 1 Kilo !!!
Date: 3/26/99 10:49:22 PM Eastern Standard Time

Elizabeth Grace topped the Kilo mark and weighs 2 pounds 5 ounces.

I have made her a couple of things to wear and my best friend's mom made her two perfect tops with matching booties.

Mark gave her a bath tonight. Both faired quite well.

They continue to increase her feedings. She is now to 21cc 8 times a day.

She has been set to the breast a couple of times. This is more for non-nutritional purposes. She is doing well with it. The nurses tell me that there are still some tricks we can try to help her little tiny self take to the breast if necessary.

She is regulating her temp better each day. She has been transferred to an isolette that is single walled and changed to self-regulating temp. The isolette no longer measures her temp and regulates for her.

The nurses have been saying that she has had some "pulse drops." This is normal but I have often wondered if she was having them for real. Now it is even LESS likely as her monitor is truly messing up and making it look as if she is having MANY of them. She will probably have a new machine by morning.

She has wakeful moments that have increased in frequency and amount of time. Usually they occur right after we wrestle her into a fresh diaper and take her vitals.

Still no new pictures. Soon I think, if the camera worked and if it is empty. Mark was shooting the camera as if the end of the role was near.
Tamie

Subj: 2 1/2 pounds today!!!/Elizabeth Grace
Date: 3/31/99 10:27:59 PM Eastern Standard Time

SHE HIT 2 1/2 POUNDS today.

At 3 pounds she graduates OUT of the Isolette (incubator).

Also, she took food from a bottle today for the first time. She did NOT do well. With one suck on the nipple her heart rate plummeted. This was expected and she recovered immediately on her own. She will have MANY more opportunities to try again.

In case you have questions in your head about sucking a nipple and having been set at the breast in the past, I want to let you know, I have to pump my breasts BEFORE allowing her suck as it could cause similar problems.

We will have to practice more before she is ready to FEED by mouth. She is still tube fed.

She is still doing very well and I am so excited to have spent everyday with her. Daycare is going on w/o me and I am so pleased.
Tamie

Subj: 34 weeks adjusted gestational age
Date: 4/7/99 8:56:03 AM Eastern Daylight Time

Baby Grace is still doing a wonderful job of growing up. She took her first complete feeding from a bottle on April 5. It takes a lot of effort and tires her. She does not take all of her feedings this way but is supplemented with tube feedings when she is unable to wake enough to eat. A feeding for her now is a whopping 25 cc, almost one ounce every 3 hours.

She should be hitting the BIG 3# mark today as she was less than one ounce from there last night. Her length is 37cm, her head circumference is 28cm. WOW!!! I just did the metric conversion; she has grown a lot, 14.6 inches in length and 11 inches head circumference.

My understanding now is for her to be able eat from a bottle or breast for all feedings, ask for it on her own instead of scheduled feedings and continue to gain weight. Of course everything else has to be right as well. She MUST not get an infection, that would be a major setback.
Tamie

Subj: Breastfeeding/Elizabeth Grace
Date: 4/11/99 11:40:32 PM Eastern Daylight Time

Grace took three feedings from the breast today. She took MORE food from a bottle. She should weigh as much as an ox by tomorrow. She had done almost only "playing" at the breast and what is called non-nutritive sucking. This is a wonderful feeling!

I am guessing that she might come home very soon. I am willing to take guesses! My guess, though nothing has been said about going home, is a week from Wednesday, April 21.

I just might be pushing things but she should weigh a good 3 1/2 pounds by then. She already cries when hungry and is feeding very well. She also is in an open crib. She is still on a touch of O2 but not much.

I bought some preemie undershirts to put under her 'grandma' made clothes and some donated by a nurse that was "waiting for the right baby."

I am so excited tonight. It is 11:30. I setup her bed up in her room and put the wall border up. We painted yesterday. I am pacing the floor! Caffeine, maybe, maybe just how wonderful a day we had!
Tamie

Subj: Just a small an update
Date: 4/16/99 8:02:22 AM Eastern Daylight Time

I do not have much to tell you except Grace is taking 3 feedings a day from the breast. She has not had to have supplemental feedings for most of them. She also is off oxygen except for feedings.

I see a light at the end of the tunnel but the Dr's still just walk by w/o a word or just a comment as they pass by. If we were not the bed at the door I do not think we would even get those. NOT A WORD in at least 2 weeks.

Today I am going to ask if I can speak to a Dr and ask some questions. I want to know what we are looking for to come home. She is feeding well, but has had an occasional tube feeding when she is too tired to nurse or bottle feed. She is on less oxygen than ANY of the babies sent home. She continues to gain weight. She gets hungry and does not just wait to be fed, she cries for food. She is still on caffeine, which they do not like to send babies home on that but they have. We have taken the required CPR classes. I do most of her care during the 7 hours a day that I spend there. I am ready to do a night over to show that we can do it.

I have her room ready and clothes washed. Mark is getting so TIRED and misses his sweet baby. He goes to see her when he is not too exhausted to go.

Tamie

Subj: Sleep over! /Coming home?
Date: 4/19/99 1:18:22 PM Eastern Daylight Time

I spent 24 hours with her Saturday night. I came home exhausted. One of the reasons I spent the night at the hospital was to see how her weight would go on the breast only. She lost... In fact she has lost weight for 3 consecutive days and her weight gain had slowed to a crawl before that.

Another thing too, she did not wake up to feed. Her monitor announced her heart rate had dipped real low. I think it was probably due to low blood sugar. She fed well and did not really miss any feedings because I fed her more frequently to get her back on schedule.

Now we know that she is still too immature to come home right away but they have started the going home procedures. They have now ordered an ultrasound of her brain, which is needed for going and are continuing to wean her from O2. They are also going to try to start weaning her from caffeine.

The news is all good, really. By the time the going home procedures are in progress she should be more mature and nearly ready. The Dr said maybe from one 1/2 weeks to 2. But then she warned that she cannot send her home until she can gain weight w/o supplemental tube feedings or becoming dehydrated or failure to thrive.
Tamie

Subj: Little Amazing Grace!
Date: 4/22/99 7:50:48 AM Eastern Daylight Time

The Dr's put her in PRIORITY for a going home monitor!

I have not seen a single child on a "go home monitor" for very long before they skip out the door.

I do know that she has to feed better but ONCE she does she is out the door. She only has to do it right ONE TIME and they send her home. It is just that the baby has to "get the hang of it."

We are waiting on her to take enough breast feedings to not require supplements.

She almost never needs O2 including feedings though the Dr has ordered a go home oxygen setup.

I know things will be even more crazy or a different crazy when she does get home. I will be breast feeding from every 1 1/2 hours to 3 AND pumping!! My shirt could have a "COME ON IN, I AM OPEN" sign.

I have found out that I cannot avoid the pumping after she eats. I have gotten clogged milk ducts from putting it off. SOOoooo, I need to NOT do that.

She has nearly outgrown some of her clothes and I have washed all the smallest clothes I have here. The preemie sizes to 5 pounds swallow her so I guess she will look like a baby in a gunnysack. I know people are wanting to get her preemie size clothes (which we will enjoy) but I hope God puts in their hearts to get bigger sizes too. She will grow fast once she gets the hang of it. SHE HAS NEARLY TRIPLED HER BIRTH WEIGHT! I am sorry but I have misplaced her last measurements.

I often think of how great her car seat/stroller is going to come in handy. She will have MANY Dr appointments in her first year. I will just have to click her car seat into the stroller and go! If we eat out I will just set her in the car seat/stroller and have a seat for her wherever we are. And, another purchase that we "splurged" a bit will be even better than expected. We got her a "bassinet" that attaches to the top of her travel bed (this will be her regular bed). It will lift her quite a ways from the bottom of the bed. It looks as if we will use it for about 6 mo instead of the original plan of 4 or so. She is fiesty so she might sit at the regular "adjusted" age, which means we will have to lower her. THAT WOULD BE OK with me.

God is good and I am glad!
Tamie

Subj: Robin Foy and Lynn Beguhn (This personal note included to give the idea of the rush and flustration that NICU life offers.)
Date: 4/22/99 7:30:21 AM Eastern Daylight Time

I sure am missing you and Robin. I look for your van everyday in the school parking lot. It isn't there.

Elizabeth Grace is doing quite well for herself. The Dr's ordered her monitor for going home. She might need O2 for feedings though this seems unlikely.

She is nippling most all of her feedings. She just doesn't gain weight if she breast feeds only for the 3 feedings a day I am there so we have to supplement with tube feedings. I weigh her before and after each feeding and give her supplements to equal 32 cc.

There are a few nurses there that have made her their special baby in the room right now. She is quite adorable. She looks a lot like Marquita did.

I am getting more and more tired. I forget to take my meds and sometimes I forget to eat. I even have to try to figure out a way to have time to do my bathrrom needs! It is crazy and I know it will not get any easier when she does get home. Mark sends me out the door saying, "get a nap." I often doze as I Kangaroo her or as I pump.

Talking about home, do they make giant plastic bubbles so NO ONE can touch her?!!! Hahhahaa!! What am I going to do?!

I watched a lot of videos and am always on the lookout for more information towards her health. They do have a series of RSV vaccines that I will request next fall.

Please get and give hugs for/from me. I truly do miss you and wish you could be here to see how well things are going.
Tamie

Subj: 3 1/2 pounds...immunizations
Date: 4/23/99 10:54:44 PM Eastern Daylight Time

Elizabeth Grace is over 3 1/2 pounds and is going to have her shots tomorrow morning for her 2mo birthday. They had her Tylenol set out on her bedside to help soothe her.

I expect that she will not nurse very well with her many doses of around the clock Tylenol and sore legs.

Please put in an extra prayer for her tomorrow.
Tamie

Subj: Pictures and update on Elizabeth Grace
Date: 4/29/99 10:08:49 AM Eastern Daylight Time

I expect that Elizabeth Grace will be coming home real soon. One Dr is ready for her to come NOW but the Dr in charge of her discharge is not quite ready. He wants her to stay about one week.

One thing that would be nice is to KNOW if she needs the apnea monitor BEFORE she leaves. If she does not need it we will not be sad.

She is tinier than most babies sent home but she was born tinier for her gestational age than most.

The Dr that is ready to send her home took her off all O2 and pulse Ox and does not expect that she will need to come home on a monitor at all. (She did have a few apnea spells in the night last night.) He did this to influence the other Drs.

The woman that gets equipment for babies said that she can get O2 and a monitor the day she is sent home so that will be good.

I spent the night Monday to breastfeed exclusively. She gained that day as well as the day after. She is now waking and asking for food. This is required to come home. SHE IS READY!!! And so are we.

Subj: SHE IS COMING HOME TODAY!!!
Date: 4/30/99 8:08:55 AM Eastern Daylight Time

As soon as the computer said, "files done" with the last mailing the phone rang. It was the Dr telling me she was discharged the following day. She is coming home today, April 30, 1999.

She will have a monitor and O2 for feeds. A nurse will come over the weekend and another on Mon. She will meet her "everyday" Dr on Mon also.

We will have her sleep in our room until we feel confident that we can hear her tiny cry from her room.

The car seat will be adjusted to hold her with receiving blankets. We will use a stack for her to sit on and a roll or 2 or 3 or 4 to fill in around her head.

We bought a car seat that fits onto a stroller so the monitor and O2 can easily be transported with her. (This was bought while I was still PG and did not realize how great it would be for her.)

Pictures of the Elizabeth Grace's first 66 days of life!"
To view as a slide show, choose VIEW PICUTRES then look to the right and choose VIEW AS SLIDESHOW.

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